Ethical, Legal and Social Issues of Digital Phenotyping as a Future Solution for Present-Day Challenges: A Scoping Review.
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SUBMITTER: Tomicic A
PROVIDER: S-EPMC8686352 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:While emerging digital health technologies offer researchers new avenues to collect real-time data, little is known about current ethical dimensions, considerations, and challenges that are associated with conducting digital data collection in research with minors. As such, this paper reports the findings of a scoping review which explored existing literature to canvass current ethical issues that arise when using digital data collection in research with minors. Scholarly literature was searched using electronic academic databases for articles that provided explicit ethical analysis or presented empirical research that directly addressed ethical issues related to digital data collection used in research with minors. After screening 1,156 titles and abstracts, and reviewing 73 full-text articles, 20 articles were included in this review. Themes which emerged across the reviewed literature included: consent, data handling, minors' data rights, observing behaviors that may result in risk of harm to participants or others, private versus public conceptualizations of data generated through social media, and gatekeeping. Our findings indicate a degree of uncertainty which invariably exists with regards to the ethics of research that involves minors and digital technology. The reviewed literature suggests that this uncertainty can often lead to the preclusion of minors from otherwise important lines of research inquiry. While uncertainty warrants ethical consideration, increased ethical scrutiny and restricting the conduct of such research raises its own ethical challenges. We conclude by discussing and recommending the ethical merits of co-producing ethical practice between researchers and minors as a mechanism to proceed with such research while addressing concerns around uncertainty.
| S-EPMC7451523 | biostudies-literature
Project description:This chapter will map the ethical and legal challenges posed by artificial intelligence (AI) in healthcare and suggest directions for resolving them. Section 1 will briefly clarify what AI is and Section 2 will give an idea of the trends and strategies in the United States (US) and Europe, thereby tailoring the discussion to the ethical and legal debate of AI-driven healthcare. This will be followed in Section 3 by a discussion of four primary ethical challenges, namely, (1) informed consent to use, (2) safety and transparency, (3) algorithmic fairness and biases, and (4) data privacy. Section 4 will then analyze five legal challenges in the US and Europe: (1) safety and effectiveness, (2) liability, (3) data protection and privacy, (4) cybersecurity, and (5) intellectual property law. Finally, Section 5 will summarize the major conclusions and especially emphasize the importance of building an AI-driven healthcare system that is successful and promotes trust and the motto Health AIs for All of Us.
| S-EPMC7332220 | biostudies-literature
Project description:BackgroundUnderstanding the perception of patients on research ethics issues related to biobanking is important to enrich ethical discourse and help inform policy.MethodsWe examined the views of leukemia patients undergoing treatment in clinics located in the Princess Margaret Hospital in Toronto, Ontario, Canada. An initial written survey was provided to 100 patients (64.1% response rate) followed by a follow-up survey (62.5% response rate) covering the topics of informed consent, withdrawal, anonymity, incidental findings and the return of results, ownership, and trust.ResultsThe majority (59.6%) preferred one-time consent, 30.3% desired a tiered consent approach that provides multiple options, and 10.1% preferred re-consent for future research. When asked different questions on re-consent, most (58%) reported that re-consent was a waste of time and money, but 51.7% indicated they would feel respected and involved if asked to re-consent. The majority of patients (62.2%) stated they had a right to withdraw their consent, but many changed their mind in the follow-up survey explaining that they should not have the right to withdraw consent. Nearly all of the patients (98%) desired being informed of incidental health findings and explained that the information was useful. Of these, 67.3% of patients preferred that researchers inform them and their doctors of the results. The majority of patients (62.2%) stated that the research institution owns the samples whereas 19.4% stated that the participants owned their samples. Patients had a great deal of trust in doctors, hospitals and government-funded university researchers, moderate levels of trust for provincial governments and industry-funded university researchers, and low levels of trust towards industry and insurance companies.ConclusionsMany cancer patients surveyed preferred a one-time consent although others desired some form of control. The majority of participants wanted a continuing right to withdraw consent and nearly all wanted to be informed of incidental findings related to their health. Patients had a great deal of trust in their medical professionals and publically-funded researchers as opposed to profit-based industries and insurance companies.
| S-EPMC3599691 | biostudies-literature
Project description:BACKGROUND:Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and research ethics boards reflecting on and dealing with these issues. METHODS:We conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed. RESULTS:We have identified 58 first-order ethical issues and challenges associated with patient partnership in research, regrouped in 18?second-order ethical themes. Most of the issues are transversal to all phases and stages of the research process and a lot of them could also apply to patient-partnership in other spheres of health, such as governance, quality improvement, and education. We suggested that ethical issues and challenges of partnered research can be related to four ethical frameworks: 1) Research ethics; 2) Research integrity; 3) Organizational ethics, and 4) Relational ethics. CONCLUSIONS:We have identified numerous ethical issues associated with the recent approach of patient-partnership in research. These issues are more diverse than the issues associated with a more traditional research approach. Indeed, the current discussion on how we address ethical issues in research is anchored in the assumption that patients, as research participants, must be protected from risk. However, doing research with, and not on, the patient involves changes in the way we reflect on the ethical issues associated with this approach to research. We propose to broaden the ethical discussion on partnered research to not only rely on a research ethics framework, but to also frame it within the areas of research integrity, organizational ethics and relational ethics.
| S-EPMC7216517 | biostudies-literature
Project description:For the past several years, the implementation of pharmacogenetic (PGx) testing has become widespread in several centers and clinical practice settings. PGx testing may be ordered at the point-of-care when treatment is needed or in advance of treatment for future use. The potential benefits of PGx testing are not limited to adult patients, as children are increasingly using medications more often and at earlier ages. This review provides some background on the use of PGx testing in children as well as mothers (prenatally and post-natally) and discusses the challenges, benefits, and the ethical, legal, and social implications of providing PGx testing to children.
| S-EPMC6800463 | biostudies-literature
Project description:Recent interest in personalized medicine has highlighted the importance of research in ethical, legal, and social issues (ELSI). Issues in ELSI research may be magnified in the rare diseases population (i.e., small numbers of affected individuals, challenges in maintaining confidentiality, and paucity of treatments for diseases where natural history information may be limited). More than other areas of research, potential barriers include the lack of funding opportunities and appropriate review processes for applications to funding agencies. The ELSI Working Group of the International Rare Diseases Research Consortium (IRDiRC) performed an informal survey on ELSI funding initiatives to learn more about different funding mechanisms and to identify potential gaps in funding opportunities. The Working Group discusses these challenges and highlights the role of funding agencies and partners such as patient advocacy groups, specialists in social sciences and humanities, and clinicians to advance ELSI research in rare diseases.
| S-EPMC6974597 | biostudies-literature
Project description:Background:Mentoring is crucial to the growth and development of mentors, mentees, and host organisations. Yet, the process of mentoring in surgery is poorly understood and increasingly mired in ethical concerns that compromise the quality of mentorship and prevent mentors, mentees, and host organisations from maximising its full potential. A systematic scoping review was undertaken to map the ethical issues in surgical mentoring to enhance understanding, assessment, and guidance on ethical conduct. Methods:Arksey and O'Malley's methodological framework was used to guide a systematic scoping review involving articles published between January 1, 2000 and December 31, 2018 in PubMed, Embase, Scopus, ERIC, ScienceDirect, Mednar, and OpenGrey databases. Braun and Clarke's thematic analysis approach was adopted to compare ethical issues in surgical mentoring across different settings, mentee and mentor populations, and host organisations. Results:A total of 3849 abstracts were identified, 464 full-text articles were retrieved, and 50 articles were included. The 3 themes concerned ethical lapses at the levels of mentor or mentee, mentoring relationships, and host organisation. Conclusions:Mentoring abuse in surgery involves lapses in conduct, understanding of roles and responsibilities, poor alignment of expectations, and a lack of clear standards of practice. It is only with better structuring of mentoring processes and effective support of host organisation tasked with providing timely, longitudinal, and holistic assessment and oversight will surgical mentoring overcome prevailing ethical concerns surrounding it.
| S-EPMC6923696 | biostudies-literature
Project description:Deciding which climate policies to enact, and where and when to enact them, requires weighing their costs against the expected benefits. A key challenge in climate policy is how to value health impacts, which are likely to be large and varied, considering that they will accrue over long time horizons (centuries), will occur throughout the world, and will be distributed unevenly within countries depending in part on socioeconomic status. These features raise a number of important economic and ethical issues including how to value human life in different countries at different levels of development, how to value future people, and how much priority to give the poor and disadvantaged. In this article we review each of these issues, describe different approaches for addressing them in quantitative climate policy analysis, and show how their treatment can dramatically change what should be done about climate change. Finally, we use the social cost of carbon, which reflects the cost of adding carbon emissions to the atmosphere, as an example of how analysis of climate impacts is sensitive to ethical assumptions. We consider $20 a reasonable lower bound for the social cost of carbon, but we show that a much higher value is warranted given a strong concern for equity within and across generations.
| S-EPMC7891186 | biostudies-literature
Project description:BackgroundBiobanks are highly organized infrastructures that allow the storage of human biological specimens associated with donors' personal and clinical data. These infrastructures play a key role in the development of translational medical research. In this context, we launched, in November 2015, the first biobank in Morocco (BRO Biobank) in order to promote biomedical research and provide opportunities to include Moroccan and North African ethnic groups in international biomedical studies. Here, we present the setup and the sample characteristics of BRO Biobank.MethodsPatients were recruited at several departments of two major health-care centers in the city of Oujda. Healthy donors were enrolled during blood donation campaigns all over Eastern Morocco. From each participant, personal, clinical, and biomedical data were collected, and several biospecimens were stored. Standard operating procedures have been established in accordance with international guidelines on human biobanks.ResultsBetween November 2015 and July 2020, 2446 participants were recruited into the BRO Biobank, of whom 2013 were healthy donors, and 433 were patients. For healthy donors, the median age was 35 years with a range between 18 and 65 years and the consanguinity rate was 28.96%. For patients, the median age was 11 years with a range between 1 day and 83 years. Among these patients, 55% had rare diseases (hemoglobinopathies, intellectual disabilities, disorders of sex differentiation, myopathies, etc.), 13% had lung cancer, 4% suffered from hematological neoplasms, 3% were from the kidney transplantation project, and 25% had unknown diagnoses. The BRO Biobank has collected 5092 biospecimens, including blood, white blood cells, plasma, serum, urine, frozen tissue, FFPE tissue, and nucleic acids. A sample quality control has been implemented and suggested that samples of the BRO Biobank are of high quality and therefore suitable for high-throughput nucleic acid analysis.ConclusionsThe BRO Biobank is the largest sample collection in Morocco, and it is ready to provide samples to national and international research projects. Therefore, the BRO Biobank is a valuable resource for advancing translational medical research.
| S-EPMC7738781 | biostudies-literature
Project description:BACKGROUND:Mentoring provides mentees and mentors with holistic support and research opportunities. Yet, the quality of this support has been called into question amidst suggestions that mentoring is prone to bullying and professional lapses. These concerns jeopardise mentoring's role in medical schools and demand closer scrutiny. METHODS:To better understand prevailing concerns, a novel approach to systematic scoping reviews (SSR) s is proposed to map prevailing ethical issues in mentoring in an accountable and reproducible manner. Ten members of the research team carried out systematic and independent searches of PubMed, Embase, ERIC, ScienceDirect, Scopus, OpenGrey and Mednar databases. The individual researchers employed 'negotiated consensual validation' to determine the final list of articles to be analysed. The reviewers worked in three independent teams. One team summarised the included articles. The other teams employed independent thematic and content analysis respectively. The findings of the three approaches were compared. The themes from non-evidence based and grey literature were also compared with themes from research driven data. RESULTS:Four thousand six titles were reviewed and 51 full text articles were included. Findings from thematic and content analyses were similar and reflected the tabulated summaries. The themes/categories identified were ethical concerns, predisposing factors and possible solutions at the mentor and mentee, mentoring relationship and/or host organisation level. Ethical concerns were found to stem from issues such as power differentials and lack of motivation whilst predisposing factors comprised of the mentor's lack of experience and personality conflicts. Possible solutions include better program oversight and the fostering of an effective mentoring environment. CONCLUSIONS:This structured SSR found that ethical issues in mentoring occur as a result of inconducive mentoring environments. As such, further studies and systematic reviews of mentoring structures, cultures and remediation must follow so as to guide host organisations in their endeavour to improve mentoring in medical schools.
| S-EPMC7395401 | biostudies-literature